Opinions on aids

heathentoad937

Hello, thank you for letting me join.

I'll give a wee bit of background but try to keep it brief! I was initially diagnosed with joint hyper mobility syndrome/hypermobile EDS as an explanation for pain I was living with. It made sense at the time, and for a period I had a lot of good days, with some lousy days. The past couple of years, the bad days have increased significantly, this year, I've had a handful of days I wasn't in pain and exhausted all the time.

I have a family history of autoimmune diseases so decided to get a private test for SLE in early 2023. Thankfully it came back with in normal parameters, at the higher end, but I think a number of things could influence that. My GP (who has been fantastic compared to practices I went to in the past) sent me for x-rays in August 2023, then I was referred to rheumatology in November 2023. I don't know if this has any bearing, but I also caught Covid in December last year. I had an MRI of my hands and wrists in April this year which showed erosion in the same joints in each wrist, and also inflammation. They eventually diagnosed me with fibromyalgia and said the MRI showed "wear and tear." Then, lucky me, I had a fall at work! I have been getting steadily worse and struggle to get up the steps to my flat. I had the occasional time I would get stuck going up the stairs, but no it's just a struggle every day. I wrote a letter to my GP for some clarity re the wear and tear, as I get the same pains in other joints (mainly knees, but also elbows, hips, shoulders and ankles). She said wear and tear isn't a great term and that I have osteoarthritis. It was disappointing to hear, but not unexpected as I had read JHS can lead to earlier onset of arthritis (due to the lack of stability in the joints). I asked if having covid then the fall could explain why I seem to be getting quite unwell so fast, and I think the fibromyalgia compounds everything.

I am doing everything I am meant to be doing, trying to stay a healthy weight, staying active, but it's hard. An added complication is that my knee buckles a lot. It's one thing at home, but crossing roads can feeling like running a gauntlet (and I can't run lol). I walk a lot more slowly than I used to, I get frequent comments that "it's a bit early for a session", all sorts of other assumptions (I'm a young looking 39 so I couldn't possibly have a health condition). I have been putting off asking about this, as I'm not sure if it could add to the issues, but has anyone with similar issues found a walking aid beneficial? If so, what ones didn't hurt wrists/hands so much? I am due a physiotherapy appointment but I am a little shy about asking.

Sorry for the long brief post!

Ellen

Good morning @heathentoad937

You do have quite a tale to tell. Starting out with Hypermobility, then fibromyalgia and now Osteoarthritis. You certainly do have a lot going on.

I think you are asking whether using a walking aid might be helpful for you? I am very glad you are seeing a physiotherapist because they are the ideal person to discuss walking aids with. There are many different types some of which you bear weight on your forearms not hands. You need to ensure the physio understands the issue with the knee giving way on you which can be dangerous particularly as you say when crossing roads.

Using a walking aid can also be useful in 'advertising' to other people that you are struggling and they may give you extra time and space. It might also make (more polite) people be a little less intrusive about your age and health.

I wondered whether you'd be interested in Jane's story:

https://www.versusarthritis.org/news/2020/may/living-with-ehlers-danlos-syndrome-jane-s-story/

and finally do have a look in our COVID 19 category you will find quite a few people have experienced issues following on from contracting the virus.

I am very glad you have found the community and hope you will let us know how you get on.

Best wishes

Ellen.

heathentoad937

Thank you Ellen! I appreciate your reply. I see the physiotherapist in a couple of weeks and will speak to them, but I may try a couple left over from my father’s knee replacements etc to see what works for me and just to take the pressure off a bit- I don’t think the cold helps! And as you say, it may at least serve as an advertisement to people that I need a bit of time moving about.

I had a read of Jane’s story, which was very helpful. I have a friend with JHS and she had to have her hip replaced at 42, so it doesn’t seem to be such an uncommon outcome, but I’ve had some conflicting information when I have asked. I will definitely look at the Covid 19 category.

Thank you again, I will update with how physiotherapy goes

ps I’m glad I found this community too :)

TiredWarrior

Hi @heathentoad937

Have you had an OT review? You can self refer to social services for community OT (Occupational Therapist).

OT had done my review 3 years ago and gave me aids for toilet seat, advice regarding other alterations like stairlift and wet room (which I didn’t get as I couldn’t afford them). I still crawl upstairs and come down on my bottom. I use 2 walking sticks (with Molded handles to make it easier to hold) or sometimes a rollator to walk at home and a manual wheelchair outdoors pushed by family (wheelchair referral was done by my GP)

I have RA but 28 joints are affected and so I think I might have similar problems. For years I used splints and supports for various joints especially at work but now I’ve had to take early retirement.

I struggle with fibromyalgia as any exertion can trigger pain, fatigue and poor sleep for several days. Hydrotherapy seems to be the only exercise that doesn’t cause pain for me but sometimes if the hydrotherapy pool isn’t hot enough (30-33°C) my joints stiffen up.

Are you still working? If so, please contact Access to Work for aids to help at work.

Also apply for PIP (describe your bad and worst days, not how you are on your good days)

I hope this helps a little. Best Wishes

heathentoad937

hello, sorry for my late response

I have found being in the swimming pool is about the only exercise I can do, and I’m not really swimming, just bobbing about the pool. I’m still working (I’m being phased back into different duties, so more office based than physical). I was signed off and had an OH referral over the phone, it mainly said to my employer that I couldn’t do any physical stuff at work now.

I will definitely look at the OT self referral. I had a physiotherapy assessment earlier this week and she’d suggest a course(?) at a local hospital to do with pain management, I am thinking of asking her or my GP to refer me. I bought sticks that had elbow support and better moulded handles, they also have flexible feet. I feel a lot more comfortable and safer using them - I am still in pain but can walk more comfortably and when my knee buckles, I at least have that extra support. I let her know everything that was happening,. she said it sounded like I’m doing everything I should be doing for fibromyalgia and OA - in a weird way, that was almost disappointing, I was hoping I’d be told to try x, y & z instead or there’d by a mystery door with a better treatment option.

I will look into the PIP/ADP (I’m in Scotland so it might be different?) but I find these forms a bit confusing so may ask a CAB office for advice. I was looking into applying for a bus pass, but you had to be claiming something to qualify, so help with that would be welcome too.

Thank you, that has been really helpful : )

Plhome

I had a knee revision in September this year after 8 years of struggle after a knee replacement that didn’t work for me. Using STAK tool for 8 weeks I gained 45% bend !!!
I was aware of the STAK system as my physiotherapist at my hospital had told me about it. I had a previous build up of scar tissue and she thought that using the STAK would [xxx] t this occurring after my revision[xxx]contacted [xxx] and arranged to start the treatment when my clips had been removed.
It was quite an intensive exercise regime using the STAK 3x daily along with other exercises that would help me to bend and straighten the leg.
I had meetings via Teams with Sara weekly and she supported me during the regime , encouraging me to move down the ladder even if it was painful.
One of the most important things when using the STAK was to ensure I took regular analgesia because I was putting the knee into stress mode by ensuring that the knee was being pushed / held into position.
After my 30 minutes on the STAK tool I then used ice packs to calm the pain sensation. Originally I used a towel between my skin and the ice pack but with encouragement from Sara I started putting in directly on to the knee joint, after the initial shock I found it was generally more effective on relieving the pain.
I used the STAK for 8 weeks and I know it was worth all the effort.
I am continuing with daily exercises and plan to keep these going. I am no longer in pain,I can sleep at night and I can walk further than I have done in years.
I would recommend this tool to others who have problems with scar tissue.

PeterJ

Hello @Plhome I'm glad you found something that worked for you. I've had to remove the doctors name from your post as this is something we do not allow on the Online Community.

Best wishes

Peter